How Organ Donation Can Transform Lives: A Teen's Journey to a New Heart
April is celebrated nationwide as Donate Life Month, which was instituted by Donate Life America and its partnering organizations in 2003. It features an entire month of local, regional and national activities to help encourage Americans to register as organ and tissue donors … and to celebrate those who have saved lives through the gift of organ and tissue donation. In addition, the third Sunday each April launches National Volunteer Week (April 21-27, 2024) across the country.
This year, in the midst of Volunteer Week, the Cobb family of Indianapolis will be celebrating the two-year anniversary of their son’s life-saving heart transplant and remembering the selfless act of organ donation that made April 26, 2022, possible. They will also be expressing gratitude for the team of volunteers who came together to make sure this costly surgery and related expenses would not financially cripple their family.
Melissa Cobb describes their son, Cayce, as a fun-loving, energetic, respectful teenager who embraces life and goes full speed ahead with anything he attempts. She says Cayce was always healthy and had never had any health problems in his first 15 years of life. That changed quickly for the Cobb family in early 2022 after Cayce had experienced several days of not feeling well. Melissa, a respiratory therapist, decided to take him to the Emergency Room at IU West in Avon, Indiana. While Melissa was not sure what was going on, she was not expecting to hear on February 4th that Cayce was struggling with Dilated Cardiomyopathy. He needed to be quickly transported by IU Health Lifeline (the helicopter and ambulance service that transports critically ill children) to Riley Hospital for Children where pediatric heart specialists could determine what could be done. Melissa said, “February 4th came as a complete shock to our family and stopped Cayce in his tracks.” Life changed dramatically that day for Cayce … and for the Cobb family.
Dilated Cardiomyopathy is a condition where the bottom chamber of the heart thins (dilates), stretches out and can no longer pump and squeeze effectively. The enlarged heart is weak and unable to keep blood circulating throughout the body. Many times, with this diagnosis, medications can be used to improve cardiac function and prevent complications. Cayce’s cardiac team spent a month trying to adjust the medications with the goal of stabilizing the teen so he could go home.
After exhausting all medication options and with Cayce’s health continuing to decline, the team at Riley determined he needed to be moved to the Cardiac Intensive Care Unit. Even with medications, his heart needed more support. On March 15, 2022, Cayce had open heart surgery to place a Left Ventricular Assist Device (LVAD), the Heartmate 3. Melissa remembers Cayce’s transplant surgeon coming to talk to her and Brian after the transplant and telling them it was extremely critical that they did the surgery when they did because Cayce’s heart was so damaged … so tenuous … that it fibrillated in his hand when he touched it. He also explained to them Cayce was much sicker inside than he ever displayed outside. Three days later on March 18th, the Children’s Organ Transplant Association received a COTA Connect referral from a Riley transplant social worker asking COTA’s team to reach out to Melissa -- an important call that occurred less than a week later.
The Children’s Organ Transplant Association uniquely understands that parents who care for a child or young adult before, during and after a life-saving transplant have enough to deal with; therefore, COTA’s model shifts the responsibility for fundraising to a team of trained volunteers. COTA is a 501(c)3 charity so all contributions are tax deductible to the fullest extent of the law, and funds are available for a lifetime of transplant-related expenses. On March 29, 2022, Melissa and Brian completed and sent their signed agreement to COTA’s headquarters … the Cobb family officially became part of the COTA Family, and Cayce became a COTA Teen.
“It is hard to think about the financial part of a life-saving transplant when things are happening so quickly,” Melissa said. “But reviewing COTA’s materials and learning their support would span Cayce’s lifetime was the reason we signed the agreement. We were well aware of the potential financial hardship associated with his diagnosis. Although we had good health insurance, we really needed the peace of mind that working with COTA would provide right now … and well into the future.”
Recovering from the open-heart surgery that is necessary to place the Heartmate 3 is intense and associated with a lot of pain, chest tubes and IV/monitoring lines. In addition to dealing with the pain, Cayce also had to undergo numerous therapies to recondition and strengthen his body after being so sick the previous month. Melissa remembers sitting at his bedside and marveling at his ability to simply take it all in stride. On April 20, 2022, Cayce was officially listed for a new heart with the United Network for Organ Sharing. This listing with UNOS typically indicates a transplant-needy family embarks upon what can be a long wait for ‘the call’ that a new organ is available. His team at Riley determined since the family lived in relatively close proximity, Cayce could wait at home, and he was released on April 22nd.
According to Melissa, “After enjoying a nice weekend at home, we were heading to Cayce’s school band awards banquet on April 25th when we got the call that a heart had been found for Cayce. His transplant surgery was scheduled for the next day. We were in shock because we had never expected it would happen so fast.”
On April 26th, Cayce received his new heart and a second chance at life. This was exactly six weeks after his LVAD surgery, which was his bridge to transplant. While Cayce’s journey to transplant was shorter than most, it did not lessen the impact of transplant-related expenses, which will be with him for his lifetime.
“Everything with Cayce’s transplant happened very quickly. There was so much to worry about when we first heard the devastating diagnosis. We simply could not focus on the financial piece of a life-saving transplant, in terms of the immediate impact on our family, and on him later in life. Being introduced to COTA removed a huge burden during one of the most stressful times in our lives. COTA’s expertise and guidance helped our family and friends to orchestrate and promote fundraising for transplant-related expenses,” Melissa said. “COTA gave us peace of mind.”
The COTA for Cayces Heart team of volunteers used social media to share videos and updates about Cayce’s journey. In a matter of months, the team raised more than $50,000 to assist with transplant-related expenses.
Just two weeks after the transplant, Cayce was released and went home to stay. In early June, his sister, Aniyah, graduated from high school and the family held her celebration outside. It was nothing short of a miracle Cayce was able to be part of the celebration by keeping distance between himself and the guests. That summer, the Cobb family was happy to be home and finding their new normal, which included lots of bike rides, walks and enjoying family time. On June 20, 2022, after a long absence Melissa was able to return to work.
“There are more miracles that occurred than we can even count. It was unclear if Cayce would be able to go back to school in person at the beginning of his sophomore year or not. But as Cayce got further out from transplant and was healthy, his cardiologist approved his return to school and would later approve him to participate in marching band for a second season,” Melissa said. “As his parents, we said ‘no’ because we thought it would be too much and there were too many germ possibilities, but his cardiologist said, ‘yes’ because that is the point of a transplant … to get back to good health and live your life.”
On August 6th, the family moved Aniyah to college and just three months after receiving his new heart, Cayce was able to return to a rigorous marching band season -- his alto saxophone firmly in his grasp. Life milestones continued for Cayce including turning 16 on October 17, 2022, and on November 12th, marching in the Bands of America Grand Nationals where Cayce’s high school marching placed seventh in the country.
On February 4, 2023 … at the outset of American Heart Month … Melissa posted, “Exactly one year ago today our journey began. Cayce was admitted to the hospital on February 4th with tons of snow on the ground in Indianapolis. To see him now, enjoying the snow he missed last year, is truly a miracle.”
This April, Cayce will be doing all of the things he loves including playing basketball, playing video games, watching sports and going out to eat as a family. He will also be working on college plans and applications. Cayce’s goal is to study engineering and math. Melissa and Brian will be excited to see how Cayce’s future unfold with his new heart … and with the knowledge that transplant-related expenses will not be a deterrent as he lives life to the fullest and pursues his dreams.
Also, this April, they will take a moment to remember the family who made the decision at a traumatic time in their lives to donate the heart that is beating in Cayce’s chest and allowing him to keep marching and dreaming.
Nationwide, April is the month that is dedicated to raising awareness about the need for registered organ and tissue donors. Many COTA families are waiting for life-saving transplants like Cayce received. You can visit www.RegisterMe.org to indicate your wish to be a life-saving donor. Every day 17 people die waiting for an organ transplant here in the United States. One organ donor can save eight lives.
For more information about the Children’s Organ Transplant Association (COTA),or to find a COTA family in your area, please email kim@cota.org.
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